Sunday, July 31, 2011

Yes, those are chocolate chips. And a second loaf in the background. I forgot how easy this was to make. The original recipe has a peanut butter frosting but it really doesn't need it--it's already yummy.

Thursday, July 28, 2011

A recent study was released and has the MS community buzzing. It essentially says:“Our study shows that under the current prescribing and pricing conditions in the U.S., the disease-modifying drugs account for about 50 percent of a person’s overall healthcare-related costs over 10 years and need to be brought into line so that they are not such an economic drain.”

Travis did a fantastic summary. The number that hit me squarely between the eyes was that, in the United States, the “cost-effectiveness” of all MS disease modifying drugs came out to an average of $800,000 per “quality-adjusted year.” That means that we are paying (whether we pay, our insurance pays, or Medicare pays) nearly $2,200 per quality day over 10 years versus those who don’t take MS meds.

Medpage adds: Ten-year disease costs were similar across DMTs, ranging from about $470,000 to roughly $493,000 per patient.More importantly, in my opinion, it points out the "positive news" that early treatment improves the cost-effectiveness. Is it just my jaded cynicism that makes me think that is just another way to influence newly diagnosed (or nearly diagnosed) people into these really, really expensive treatments?

Wednesday, July 27, 2011

I've been having a hard time with things. Nothing in particular. Just things. All of a sudden, I'm just overwhelmed and I fall to pieces. I know it will be better, and probably very soon. But I can't stop falling apart with the smallest provocation. Things just don't seem to be going smoothly. At all.

I just returned this book to the library. I thought it was good although I took quite a while to work my way through it. I'm not sure there was anything new but it did validate some of the things I've picked up and implemented in my life. The author spends some time talking about the cognitive and emotional problems we may have with MS, including examples from specific people, touching on blame and moral judgment; unresolved conflicts causing physical symptoms; the triad of depression, anxiety and pain;

Here are some excerpts (from the author and from people with MS):

It's the power of the possible that counts.

Maybe I wasn't eating healthy, maybe I wasn't a good person, maybe I didn't pray enough. I wonder if this is God giving me a message, or what I did I do wrong? The truth...is that I didn't do anything wrong.

It's not all in your head; it's in your immune system too.

Forgetting may be more of a matter of displacement than disappearance.

Then the book gets into how to deal with with all these stuff going on in our heads. Recommended actions include exercise, meditation, and journaling. These are things I'm doing but I don't feel like any of it is working right now! It was a good reminder that I'm not alone, others feel this way, and I am going to have to keep working on my health.

If I am not for myself, then who will be for me? --Ancient philosopher

Tuesday, July 26, 2011

I went (later than I hoped) to get my blood drawn for the endocrinologist. As soon as I was done, I took my thyroid medication, picked up a coffee beverage from Ground Control, and headed to work. I had to deal with some things at work that really zapped my energy, and a long business lunch made me feel less productive.

I got home and had an odd experience. I turned off my car to go inside, and the car beeped. And then it was quiet, but it beeped again. And it kept doing this. I opened and closed all the doors, checked the lights, turned the car on and back off--nothing made the interval beeping stop. I started to feel frustrated, but I thought about how to handle the situation. I looked through the manual and didn't find anything relevant; I looked online and didn't find anything relevant. So I called the dealership where I bought the car, and I got a service guy who really tried to help me. But he couldn't. We determined that the beeps are about 45 seconds apart. I called the dealership closer to me and the service guys were gone but I can go in the morning. Assuming my battery isn't dead by then....

Monday, July 25, 2011

Friday night, well, it's the end of a long week and we're just getting stuff done. Including calling a family member about a party that is supposed to be Saturday. We're calling the family member because we didn't get an invitation. It's not at all where we thought it would be. They apparently forgot that we moved to the southwest valley. Even though they have been to our new house. More than once.

Our friends came over Saturday morning. He installed our kitchen lights and she brought me her old bike (she got a new fancy bike). When they left, we got ready to leave.

We went to my friend's house in the far east valley; she is moving with her family to Chicago in a couple of weeks. We've been friends for about 20 years and I am going to miss her. She is uber-fun. She was having a yard sale outside and a discount sale for friends and family inside to get rid of her husband's stock of sunglasses. I called to find out if we could still come over since we were running pretty late and I thought they would be packed up. I won't have another chance to see her before she leaves. She was enthusiastic so we went. And hung out with her and her sister (another friend of mine, who was selling her stock of dresses from a retail store she just closed) for a few hours. They gave us some unreal deals. And we got to hang out.

When we left, the party (the one we weren't really invited to attend but were expected to attend) was already started. And we were probably an hour away. Did I mention that the party location was in the northeast valley? No, more northeast. Keep going. You're almost there. But we're not. It's not even close to the people throwing the party or, as far as I know, any of their friends. I hope they won't care that we aren't going, since we weren't invited.

We go to dinner with friends who were out of town for my husband's birthday. We go to a bar and get kicked out before we get in. (I can't make this up!) We go to another and have a good time dancing. And, for someone in our group, apparently drinking too much. Great group of friends, fun times. Out way too late. I was actually nervous driving home, I was so tired. I know, I'm old.

My husband insisted we were going out with friends in the morning. And we haven't even packed for his business trip. We get up, not at all early enough, and yet way too early, and pack for his trip. Then we go meet the friends. He and the other guy leave for their trip. Girls day out! Or in. We go to lunch (margaritas!) and then to my house for Dance Dance Revolution, Mudslides, Kettle Crinkle Buffalo Bleu Potato Chips, and Mario Smash Bros. Kickin ass, takin names!

When they leave, I eat a little dinner and sit down to read in front of the TV. And then I wake up and go to bed. I know, I'm old tired.

I don't know that I would change anything I did this weekend. But I think this represents my weekends pretty well. So if you come over and my floors are dirty, or the toilets need to be cleaned, or there is laundry drying on my patio and in all my bathrooms, give me a break. (Okay, that last one is because my dryer is broken and under warranty and they aren't coming to fix it for two weeks.) I don't actually spend any time here.... Don't judge me!

Friday, July 22, 2011

I got home last night and went out back with the pooper scooper to clean up the yard. While I was cleaning the yard, Cassi decided it was time to do her business, so I bagged it for the vet. I took it this morning (I did NOT eat breakfast in my car today) and the test came back negative for parasites. Whew. If her poop looks normal after a few days, I can discontinue her medication and probiotics.

*****

On a major street near my workplace, a weird light was put in recently for pedestrians, since they were crossing there anyway. It has always amazed me when people just cross the street, outside of a crosswalk, like someone isn't going to hit them. A friend of mine lives near my office and she has mentioned that there is a location that people cross in front of a particular restaurant, with no crosswalk, after dark, and it feels like being in a frogger game or something, trying to miss these people darting (hopefully) across the street.

So a woman in Atlanta has been charged and convicted with vehicular homicide because her four year old kid was hit by a drunk and drugged driver (his third hit and run). Although many (including the jurors apparently) do not agree with me, I do not think it is a fair charge. Maybe, maybe, the reckless conduct charge, but look at the photo. That looks like a direct path. I can't even see where she would have crossed in a crosswalk, so it is pretty far. When someone is hot, tired, dragging kids with them, well, I can't judge her for her choice.

*****

I love books. And libraries. And bookstores. Peaceful, cool, infinitely interesting. I buy online sometimes but I like to browse. So Barnes and Noble is generally my first stop for book shopping. I was at lunch today and someone was talking about how awesome the new Color Nook is. I do not have a "reader" yet, but I think there is a case for the Nook. And Barnes and Noble! Do you fight the Amazon monopoly when you buy books?

Thursday, July 21, 2011

I was wondering, why do the skinny people in the office bring in the worst-for-you treats? Why are these the people who want to have an ice cream throwdown, with everyone else acting as judges? Why are our skinniest friends the ones who post pictures of their favorite breakfast of chocolate chip or big-as-your-head pancakes on FB--again, too often? (On the days they aren't--or maybe they are--posting their daily mile updates?)

I saw this list, 8 Ridiculous Restaurant Calorie Bombs, and as I'm reading it, I'm thinking, who eats this crap? And then, I see the Cheesecake Factory Ultimate Red Velvet Cake Cheesecake. "One slice of this sweet treat is comparable to an entire tub of Breyers All Natural Homemade Vanilla ice cream." Yep, it's ridiculous, and I ate it. With my thin friend. Of course.

Wednesday, July 20, 2011

As people hear about how much I'm spending for (legal) drugs, I get suggestions for lowering my medical costs. I think they are good suggestions for "normal" prescriptions, but my big-ticket item is NOT a "normal" prescription. So none of these suggestions are panning out yet.

On the radio, they were talking about ways to save money and they said to check out this website (bizrx.com) to comparison shop for prescriptions. After paying $75 yesterday for my Valtrex, and my previous prescription woes, I jump on it. And it doesn't help. It doesn't help at all. *sigh*

Tuesday, July 19, 2011

I recently went to a time management course and I'm trying to modify my system to be more efficient. I'm not sure I'm there yet. I'm having a lot of emotional ups and downs and feeling very out of control. I have this master list, and a daily list, and then all of these things happen.

We bought a new washer and dryer when we moved last year. My dryer has stopped drying. I have laundry all over my house. I'm pretty frustrated by the extra work.

Maybe I've been more stressed than usual. I'm having an outbreak of the vaginal type. Off I go to the gynecologist. Wow, that was painful. They take blood and send me away with a prescription for Valtrex. But I get a free gift with purchase: an order to get a mammogram after my birthday.

I go to Walgreens to fill my prescription. I'm not feeling so well; I'm probably walking pretty slowly as it hurts to move suddenly. A lady is walking nearby, and she starts saying (very loudly) "praise Jesus" and then singing the song that is playing on the store system. I've never heard this song before but she is complaining very loudly about the lack of other people praising Jesus and wondering very loudly how everyone can just stand there and not sing. Are you kidding me? You are so Christian, you want to loudly worship in the Walgreens and then you are going to be totally judgmental about a bunch of (presumably) sick people at the Walgreens pharmacy not sharing your vision of how to worship our Savior Jesus Christ? Maybe you should go home and read your Bible more.

In the past couple weeks, Cassi pooped and peed in the house. We had the doggie door closed while we're retraining the girls that they can't bark incessantly at the neighbor dogs. One day, I was working at home and she had been outside a couple hours earlier, but there it was. Then she pooped in the house while my husband was home. Then he came home yesterday and found that she had pushed her way out of her playpen (she can't be in a traditional kennel because she is claustrophobic) so that she could poop on the floor. I was concerned when it started that it could be a medical issue, but it seemed more likely a behavioral issue. That last one caused me to call the vet, so she went today. They are going to check her poop for parasites (when I bring a sample in) and they prescribed an antibiotic and probiotics.

I'm checking things off the list but only because I have to add all of these urgent things to the list.

Sunday, July 17, 2011

Friday, July 15, 2011

We finally watched Super Size Me. It was released in 2004, so it's interesting to see how things have changed. And how they haven't.

In the documentary, Morgan Spurlock documents his 30 day challenge--he eats McDonalds. Only. Three times a day. Anytime the McDonalds employee asked if he wanted to supersize it, he said yes; he did not supersize at any other time. He starts off with medical evaluations and he's in good health. As the doctors monitor him, there comes a point where my husband says "why doesn't he just stop?" Morgan talks about the marketing and health issues and it is a very interesting film, even after all this time. Although they deny it was due to the film's premier at Sundance, McDonalds stopped their supersize campaign shortly afterwards.

There are a lot of interesting facts throughout the movie. At the end, the movie explains that he gained almost 25 pounds; it took him 5 months to lose 20 pounds, and 9 months to lose the rest. There are criticisms of the movie's methodology, but I think his point was made. Americans eat at McDonalds (and other fast food restaurants) much more than a nutritionist would recommend. The criticism suggesting that he ate more calories than a typical eater seems disingenious to me. I really don't see "the McDonalds public" counting calories or considering any nutritional content at these restaurants. There is sugar in almost every food product they sell--and we're addicted. America loves it.

Personally, I rarely go to McDonalds. I like some of their food when I go. But I know that it's not healthy. It doesn't make me feel good. I don't look at anything on their menu and think that it's any healthier than anything else. The salads have more calories than the burgers, the dressings and ketchup have high fructose corn syrup, the grilled chicken somehow ends up worse than the breaded. I find that I'm better off just accepting that it's a treat, for the rare times I end up there.

Thursday, July 14, 2011

I have seen several MS bloggers write that one of the worst things about MS is the loss of control. I like to have some control, be able to plan, and have choices. MS has definitely changed that. (Well, so have some people and circumstances, but that's for another conversation.) I no longer have "normal" control of my body, I can't plan on having a full day (or not), I don't think I have control of my emotions. Okay, I probably didn't have such great control over my emotions to start with. But I feel out of control sometimes, like what am I doing or saying--is it me or someone else?!

I was watching some episodes of My Fair Wedding when it occurred to me that I would not have been able to give my wedding to David Tuttera. The end result can be as awesome as he thinks it will be, but we loved all the personal choices we made. One of the things that made me think about this was a situation in which he moved the ceremony from the church to another venue. I wanted a church wedding and some guy (who I'm not marrying) is not going to move the ceremony to a banquet hall. I feel the same about those shows like Trading Spaces, where someone comes in and changes a room in your house without your input. Yikes, no way.

My husband and I have had several cases of credit card fraud--and that situation always feels out of control. In each instance, the bank called because they were suspicious of the charges. This latest version was on my card, and the charges were being processed while I was working at home. I used the card a couple of days ago, at a very nice resort in Scottsdale where I was attending a seminar, to purchase lunch. I think that every time we have experienced credit card fraud, it has been shortly after using our card at a restaurant. This is why we don't use our debit card for purchases. Anyway, I won't be able to use that card (my rewards card) until I get the replacement. Argh.

I guess I just control what I can. So, when I'm feeling out of control, I check out the bloggess and laugh my ass off. She just posted this video presentation on the Art of Being Furiously Happy (or doing ridiculously silly stupid things.) Things I wish I said:

In your life, you are going to be tested with tragedies...and assholes are going to try to destroy you.

All were moments that made me so incredibly happy and aware of the moment.

I absolutely deserve to curl up in bed and cover my head and never leave again but I also absolutely deserve the right to be furiously happy.

Allow yourself, demand of yourself, that you listen to that inner child...it's not just about you. It's about the people around you that you bring a smile to. It's about being furiously happy and indignantly joyous, because enthusiastic ridiculousness can change your day, and sometimes it can change the day of those around you, and maybe, just maybe it can change the world.

So, go on, ask a police officer if you can tase someone. And watch out for that Zombie Apocalypse.

Wednesday, July 13, 2011

Yesterday, in class, we were asked what we would do with an extra hour of time. And then today, butyoudontlooksick asked finish this sentence: if I had extra "spoons" today I would spend them on....

I think the distinction is a fine but distinct one. The first one asks if I had more time, what would I do. But I've lived with MS long enough to know that the reason the first one is even an issue is that the spoons are not there for me, even if the time is. So when I say I don't have enough time to get through my list, I don't necessarily mean "time." I mean that I'm out of spoons, and I'm not doing anything else; I'm done!

So if you DON'T have MS, what would you NOT do on your daily list, because you ran out of spoons? What 5 things that you did today, would you skip, because of MS fatigue? And remember, if you push those things to tomorrow, something has to come off of tomorrow's list. You probably won't have more spoons... Good luck!

Tuesday, July 12, 2011

It's hard to go to an all-day seminar, for time management! Okay, it was really about prioritizing. I think it was worthwhile, a refresher of sorts but I also picked up some tips and tricks. I got a new planner, which I probably don't need (so let me know if you want a standard Franklin Covey planner cover!) but the pages are potentially better than what I was using. If I use them correctly. I am going to fulfill the commitments we made in the class today for homework assignments over the next month. The things I'm unsure about are 1, he wants us to use "one calendar" for all time commitments (and I use 2 electronic calendars and one paper calendar to combine them), and 2, the weekly planning is to include both personal and professional planning, which will be a transition for me. If it seems to be making a difference, consider me a convert.

Thursday, July 7, 2011

I have been following this blog (and may have posted a link or two previously) and just noticed that I really. really. related. Okay, she's not my twin or anything (that I know of) but I think she might be inside my head, taking my thoughts and feelings, and then writing about them. She says about herself (in part): I'm extremely close to 40! And I happen to have ms. I won't capitalize it, because it's not worthy. I won't refer to it as "my ms", because I won't own it. But really, the most important thing to know about me is...I am blessed! See, doesn't that sound just like me?!

Wednesday, July 6, 2011

I left work early to meet with the landscape designer. We're making progress but still, some things are not on paper the way we discussed. We made several changes, as we are trying to scale back before the pricing is started. My husband and I are pretty much on the same page at this point, which is a relief.

After the designer left, we went out to the front yard to give the roses and tomato plant some extra water and wash some bird poop off the garage door. Really, I don't even understand how that mess ended up where it did, but it's gone now. After cleaning the door, I also cleaned the front entry window which was noticeably dirty from the dust storm the previous night. I decided to clean the inside (only) of the sliding glass door while I had the supplies out. Since no one who helps me with household chores wants to do this chore, it hasn't been done, well, probably for about, hmm, how long have we lived here? Yeah, that long. I'll tackle the outside tomorrow. Maybe. As I'm finishing, the man wants to know about dinner. Grrr. I'm totally exhausted and sweating and hot. Yes, I made dinner. No, he didn't like it, but he didn't complain. Much.

So the bigger "news" happened while we were out front. My man asked me to check on the dogs because they were being very quiet. Yes, it is like having kids, even if you don't think so! As I turn to go, a lady came out of the house next door and says her little dog is in our backyard. Eeep! I, very casually, head into the house and out back. Cassi and Teka are following a little black min-pin, walking next to the wall towards the back of the yard. My man brings the lady in the side gate soon after. We call the dogs to us, but the little dog finds a hole in the wall that he likes and goes through.

So what have we learned here? Teka did not harm the little dog, or even bark at him. She did get her butt feathers ruffled a little but she was behaving just fine. The man thinks it is because the dog was not in her face, but Teka's face was in the dog's butt, so what's the difference? I need to move this rehab experiment along somehow. Hmmm. Oh, we also learned that the lady "living" in the RV parked in the neighbor's back yard is just visiting (for another 10 days or so) and the actual (new) homeowners have a little Chihuahua, about 6 pounds, and a bigger dog. I'm not sure how they are keeping the little dog in the yard over there, but we haven't seen him. Yet...

Tuesday, July 5, 2011

I'm having a friggin Monday. I know it's Tuesday, but this was a holiday weekend. No, I did not rest. Not. at. all. Saturday, I met my friend for light shopping and lunch before her hair appointment. Light shopping means that we had something to accomplish, but not much. In this case, she was returning shoes to Nordstroms, which meant that we were trying on more shoes at Nordstroms. (insert giddy gleefulness here!) I tried on those gray Tom's wedges that I was salivating over. Disaster. The left one fit alright; the right one flopped around every time I tried to take a step. Damn skinny heel or whatever. The sales guy really wanted to make it work so he brought me the next size down. Now my left foot was pinched and my right foot was being smothered in the front but was all comfy like in the back. Um, yeah, take these shoes. Do not bring any more. Thanks.

Disney princess--safe for children?

I was planning to go to Target after our lunch of salads and (red velvet) cheesecake, and she had seen this Disney princess disaster there, just posted on her FB for everyone's comments. I doubted I would be lucky enough to see this abomination, but she offered her photo, just in case. Um, yep, I saw one, sitting there tauting me--there's something wrong with people, look at me, I'm proof!

I spent two hours at Target before heading home. I know, I spend too much time doing everything. But I had a list. And Target did not organize their store in order of my list. I don't know what they are thinking. Games and paint brushes are on one end, and gardening stuff is next to the groceries on the other. I never found the silk plant cleaner for my MIL. Bless her heart, she can go through an entire bottle cleaning one fake plant. And I obviously need fake plants as my FIL is already pissed off at my lack of a green thumb as I kill his cherry tomato plant by, well, doing nothing at all. In my defense, it is something like 118 degrees and our yard has little shade and the water may not have been set correctly (but not by me--that's not my area of expertise.)

That pretty much wore me out and I'm only on the FIRST day of the long weekend.

Sunday, we went bowling. My average improved! After lunch at Ground Control, where my husband's new favorite beer resides, and there is gelato, we went to our house to combine into our car and go to K's parents house for some pool time, followed by dinner. I learned A's secret to her scrumptious guacamole, but I've decided to forget so that she always has to make it upon request. I didn't drink (there is a reason I'm telling you this) and I drove us all home (that's not it). Then I passed out on the couch. Seriously. passed. out. I could not wake up enough to get up and go to bed. For about 3 hours, I tried. I finally was able to get up, take my medicine (way after I was supposed to) and go to bed.

Monday, I did some housecleaning, laundry, pet care and then watched TV with the spousal unit. We watched some of Jamie Olivers Food Revolution. I highly recommend this show. Besides his English accent and cutie patootie kids, there is some fantastic information about our food. And by fantastic, I mean totally disgusting. We were amused (that is not at all the word I'm looking for....) by the fast food guy who didn't want to change his business, at all, even when it seemed totally obvious (like he doesn't/wouldn't feed that syrup to his kids but he'll totally put it in the milkshakes he sells to his customers). And then my husband, God love him, lets me know that he does not care what is in his ice cream if it means that he can't have cookie dough ice cream. Some bugs and feathers never killed anyone, right?

We turned off the Food Revolution marathon to go to our friend's house. We decided not to swim, but went to visit R and his family. It was a great group, fun visit, good food. When they started getting the kiddos ready to go to the park to see fireworks, we headed home. O. M. G. How do I manage to do this almost every year? There is something wrong with people. There is something wrong with people on the 202, east and west bound, near Tempe Town Lake, before, during, and after the fireworks show. I know I should have, could have, gone another way, but I forgot. And I didn't. Right about the time I took the 101 to the 202, I realized the fireworks were JUST starting. And people are PARKED ON THE FREEWAY. I actually, no lie, can't make this up, saw someone parallel parking in the emergency lane on the right side. People in the first lane over were on top of their cars. The second lane, and to some extent, the third lane, were stopped. Not moving. The carpool (not during those hours of course) lane to my left was mostly moving, but did stop. I told my husband I was going to lay on the horn if my lane came to a complete stop. It barely kept moving, so those idiots taking video with their cell phones from the tops of their cars were spared my alarmingly wussy Prius horn.

In case you have missed my opinion in the previous paragraph, it is NEVER okay to use the freeway like a parking lot. This is not your front row seat to someone else's event. Is it really the first time you have ever seen fireworks? Could you not see them and keep driving? Do you know that there is something wrong with people? By people, I mean you, kicking it yo' on the freeway.

And today, a workday. A hard day. A lots of pain day. Which makes me less productive. But wait, there's more! I get to go to the lab and have my blood taken for my first trial extension visit. N from Hope Research only has four tubes to get filled today. When I ask if that's the last tube, the funny guy taking my blood says only four more. We quickly inform him that last time, I had 8 tubes taken. Bigger tubes than today. He is feeling less funny. I go fill my, ahem, cup. I'm having hesitancy today due to the pain. Or maybe the pain is due to the hesitancy. I just know this is my fifth time in the bathroom today, only the second, ahem, liquid-only visit, and I haven't even had lunch yet. I'm going to Dutch Brothers for a frosty treat. They are always so nice to me and I can't weep while drinking chocolate coconut coffee goodness.